A blog about Rectal Cancer, and the roller-coaster it takes you on. No matter how sick you start to feel you just can't get off until it stops - one way or another - and in the meantime life goes on pretty much as normal.
So this is a blog both about rectal cancer and life going on as normally as possible... :-)
Please do feel free to leave comments, comments are great :-)

About Me

I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010.
Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Saturday, 3 December 2011

A frustrating week all round........

I'm now two weeks on from the end of my palliative Radiotherapy. I think you'll remember that I told you that the best case scenario would be that 7-10 days on I'd be 'pain free' .....well, 14 days on I'm on middle ground.
The pain 'has' diminished slightly (and I do mean 'slightly').. at times but I still can't function without pain relief every 6 hrs. Yesterday was probably one of the best days so far and I felt quite optimistic that the Radio had kicked in, done it's job and killed the bastard tumour off to a point where it was no longer going to give me constant, persistent pain - but today I've been back on normal dose pain killers once again. Bollocks!
Over the past 10 days I've also developed a pain in my left hip that feels very very similar to the pain in my spine - double bollocks!

But being realistic, I guess I just have to be happy that I can cope with the pain and it might still reduce a little over the next week or so - hopefully.

Apart from that, lots has happened.
Had a follow up with palliative care for pain relief tweaking. Next appointment mid December to see how I'm getting on with that.

Also had a follow up appointment with the BC team on Wednesday. Felt really optimistic about this as they have been so so helpful to me since my nice colorectal nurse, L, referred me to them for support with the spinal mets. Sarah came with me for the appointment and I was so glad that she did because this time things really didn't go to plan.
Saw a different Doctor who was like an ice-maiden, cold, frosty and repetitive. She started our conversation by asking if I'd completed my Radiotherapy then said 'I don't know why you're here.....you don't have breast cancer'!
I was a little knocked off balance by this (because I KNOW I don't have breast cancer and so did the BC team) so replied that yes she was correct, however because of the spinal mets, my colorectal nurses had asked Mr R to look into my case and he'd said he wanted to take over my care for the mets - despite me not having BC.
She sat there stony faced and said 'Yes, but you don't have breast cancer and I don't know why you're here...why are you here today?'....
Told her she's the Doctor and she should know why they'd asked me to come back today...and then I started to cry because I could see that this was the time I was going to be told to clear off.
She then told me she'd met with Mr R that morning and he'd said he didn't want to see me in his department again.
More stuff was said - mainly by Sarah as I couldn't get my head together enough at this point to have a rational conversation and then we left, me still crying and Sarah furious (although she stayed completely polite and calm in the face of Ice-Maiden).
So, dismissed from the Breast care team and once again wondering where do I go from here. That was my Wednesday morning.
Then in the afternoon developed a really bad stomach upset which has lasted until today. Just about sorted it out now by eating only light meals and sticking to simple things like toast for a few days.

Thursday I received a letter from the Oncology dept at G hospital offering me an appointment BUT I'd said during the meeting with Ice-Maiden that I didn't want to go to 'that' hospital, I'd clearly said I wanted to go back to my original Oncology team at StT as I knew them, knew the way the dept worked and had got to know the staff there. She agreed at the time - then referred me to the one I'd specifically said I didn't want to go to. Cried some more - out of frustration really (and the cramps from the upset stomach didn't exactly help).

I'd also recently cancelled my out patients appointment on Mon, 28th Nov with the colorectal team because I'm having a staging CT scan on 19th Dec and it didn't make sense to meet with them before this took place. So I contacted the appointments dept and asked for a new appointment to take place after the scan on the 19th Dec....received that through the post on Friday - new date 28th MAY 2012! FFS......cried some more, again out of frustration more than anything.
Sat there thinking, been dismissed from one team, the other doesn't want to see me for 6 months, can't go where I want for Oncology, still got spinal pain, now developed hip pain and just felt that no-one gave a shit about me anymore :(

Then Friday afternoon received a telephone call from the lovely nurse at Beating Bowel Cancer (an amazing charity organisation). Spoke to the lovely Nurse L, who listened to all my moans and groans and gave me some really constructive advice and got me back on track with my next steps.
**see my note at the bottom of the page for other info about Beating Bowel Cancer............

Then later on Friday afternoon I got a telephone call from my nice colorectal nurse, L, who said she was a bit confused about a few things. She had thought that I had asked NOT to be seen any more by my original colorectal team as I was unhappy with my care. I informed her that was not the case at all, what I had said was that I was happy to stay with the BC team for the spinal mets as they have more experience in this particular area but I had not said I wanted to go elsewhere when dealing with the original colorectal issues, such as the ongoing lung questions etc.
We had a frank chat and I explained how frustrated I was feeling with everything that was going on around me at the moment. I did clarify that I wasn't unhappy with the care that she (L) and her colleague S (both colorectal nurses) had given me BUT I felt that the delay in referring me for a bone scan was wrong and that I'd felt at the time (back in June) that the surgeon should have taken me more seriously when I asked about the bone pain and told him I felt it could have been cancer related. I said I felt I should have been referred for a bone scan at that point, not sent away to see my GP about this.
She assured me that both she and S are on-board with me, willing to do the whole journey with me and will do whatever they both can to simplify things as much as possible.
She is now going to try to reorganise my Oncology appointment, get me seen again in the BC team (by a NICE doctor - not the Ice-Maiden) and also rearrange my 28th May appt to take place shortly after my latest scan in December. So all in all a constructive chat.

It's been a crap week to be honest - but I'm okay again now :)

** As mentioned above, I've recently had some great support from the lovely nurses at Beating Bowel Cancer. They are a charity organisation who assist anyone diagnosed with bowel/colon/rectal cancer including relatives etc..My friend Alison's husband, Bob, is currently fundraising for this great charity. He's asking for sponsorship to grow his beard and all cash donated goes straight into the 'Beating Bowel Cancer' pot.Personally I can't praise them enough - they are the most helpful, understanding and supportive group of people ever. So, if you'd like to sponsor Bob to turn into a hairy man just in time for Christmas the link to his page is here....http://www.justgiving.com/BobSelfeDecembeard

15 comments:

Absolutely stunning account....At a time when you should not be getting stressed, should be relaxing in order to build yourself up you are frustrated and upset. At a time when it is bad enough to have one major cancer with resultant surgery - you have another pretty serious cancer which the processes to support you, should be written easily and followed by the care team to the letter...there doesn't seem to have been a coherent care plan...obviously I am telling you stuff that you already know and have noted in you recent update, however I had to write it down as I couldn't understand why and how? Why are there people in a caring profession that clearly should not be in the job. Why is the care from one county to another so bloody different....I am so angry for you (need to breath and stay calm). I am so glad your two colorectal ladies are taking accountability and ownership for your care - In our situations we need to feel the love in huge amounts. With what is happening to our bodies and the potential outcomes we need TLC.

Like I said GLAD so much that you are finally being listened too...

I will stop waffling, just wanted to let you know that I know how you feel.

Bloody hell Carole, what a nasty Doctor you had....it makes me so cross....you are going through so much and suffering such pain, Still going about your work and business as best that you can, and you get that....that.......COW of a Doctor!I am really pleased that you had Sarah with you......listening to your story, I sometimes feel that there is little care an compassion from medical staff!I don't know what else to say....just keep taking your pain meds as and when you need them. You must make yourself as comfortable as possible to have any quality of life with your lovely family.Never forget that I am here, and you call any time to shout, scream and swear!!!Hugs Carol

Oh Carole I'm so sorry- just when you really need other people to step up and sort out your care and let you be the patient, you are still having to organise everyone. Very glad that you have a few nurses who are behind you, and that you could talk frankly to. I've said it before but I'll say it again- when my mum was ill and I stumbled upon your blog, I was so inspired by your courage and frankness and it really helped us to face things head on. Thinking of you lots and willing a peaceful December with less pain for you, as I can't think of anyone who deserves it more. Alice xxx

Dear Carole, been following your blog since your kind words on a scare I had last year. For me it was all ok although my mother in law has recently had a bowel tumour removed and has started the ongoing process of managing future treatment options, plus difficult decision that she may not have any follow up. Really just wanted to say have no idea what you are going through but your blog has been helpful in giving direction to my mother in law in relation to what she should ask and where she should focus her attention, so thank you so much.I am not a religious person in any way, all my parents/grandparents died when I was young in different ways, so a different pain, and therefore sometimes not much for me to believe in, but I do believe your strength and will to carry on is a huge inspiration and i do wish you the very best in whatever time you/we all have as we move forward. Sue

Hello Carole, thinking of you and wishing I could say something to help or comfort you. I know as well as anyone that the treatment you get can be as much as a rollercoaster as the disease. My phone didn't know the word 'rollercoaster' though and suggested 'torturer'...that might raise a smile! Take, care my dear...

Like Tony it makes me angry that you have to be so proactive in all aspects of your healthcare. Any lesser woman would have crumbled by now. You have amazing strength and determination to doggedly fight on for what is your right to a chance at decent healthcare.I continue to thank my lucky starts that up here in the 'sticks' I have it so much easier.Sending love and hugsFiona x

I'm just a person that stumbled across your woes on the colerectal nurses site, I messaged you remember, and find myself thinking of your fight with cancer daily, it makes me realise how selfish myself and others are when moaning about our daily troubles, I wish I could take away your illness and put you back how you should be enjoying your life I really do. Keep fighting Carol there are many of us rooting for you and with you all the way. Richard xxx

Good Lord, you've been going through a lot! And the ice-maiden doctor, what was her problem? That was terrible. Sorry for all your anguish, tears, pain and worries. You did have a "crap week" for sure. I'm sorry. Hope things start improving for you soon. My best.

Hey,How is my special sunshine lady doing? Do I need to fly over there and smack a few people in your health care system? 'Cause I will!

I thought you would like to know that I can push out a 12 -15 inch stool as thick as my thumb on a good day. That is some serious post rectal cancer bragging rights. Especially since I no longer have a rectum. I'll bet you can't match that with your stoma. :-)

I've been meaning to ask you how you and Rab met. How about you give us the story in your next post.

Hi Carole,This has been my first chance to catch up with your blog, and i'm so sorry you had such a terrible time with that horrible doctor, but so glad you had Sarah with you for support, it amazes me why some people choose this proffession when they obviously don't have a caring bone in their body, I'ts just as well you have so many other professionals on your side,My best wishes to you as always,Lynn x